Acid Reflux, Constipation, Seizures & Up-to-3

These past few weeks Abi has really struggled with her Acid Reflux, and Dave & I have really struggled with figuring out what we can do for her. And on top of that, we all were lacking much needed sleep at the Richards home because of it. Abi has always had AR since she was born, & has been on medication to help it. As time went on, she started doing really well & so we weened her off of the medication. The weekend Abi was diagnosed with Aicardi Syndrome, she was up both Thursday & Friday nights screaming & crying non stop. She was not comfortable & not happy. So I talked to Dr. H. that saturday & told him of what was going on. He said it was her acid reflux & to put her back on her medication, and if it was not better by Tuesday, to give him a call & we would try something else. Well, it seemed to be working, but by the time the next weekend came, we again stayed up all night with her because she was doing the same thing. Dave & I ended up taking her into the ER last Saturday night because she was crying so bad. They looked her over, but could find nothing wrong. They too agreed that it sounded like her acid reflux. So they had us instead of giving her half a tablet of Prevacid a day, to give her the whole thing every day. It worked...but not for long. So, we took her into Dr. H. this past Wednesday, & he gave us some tips on what we can do to help her be more comfortable and help decrease her fussiness and our lack of sleep. We now are giving her half a tablet of Prevacid in the morning & the other half at night. If that seems to not help, we give her some drops that are for stomach cramps or colicky babies. AND, if that doesn't help, we give her Maalox. So far Abi has done pretty well these past 3 nights. We have had to give her the drops & Maalox, but yesterday I skipped giving her the drops & went straight for the Maalox. As soon as she took that, she was calm & slept great! Cross your fingers that this continues to help & we have her AR under control.
As for the constipation (if this makes you ill, then stop reading now), she has also struggled with bowel movements. We have tried Glycerin Suppositories, Miralax, prune juice, fruits & cereals with fibers in them. Since the ER incident, I am happy to say that Abi has had great bowel movements. Whew! Infact, we get really excited when she has a messy diaper, cause we know she is not having constipation issues & she is so happy afterwards, & it less pain for mom & dad trying to figure out what we can do to help. We just feed her prunes or any fruit with lots of fiber in it in the morning and afternoons. This way, she is keeping her bowels comfortable & clean. :0)

The seizure update is that Abi has gone from having 4-7 seizures a day, to anywhere from 1-5 seizures a day. She averages out at 3 a day. To us, it still seems a lot. She has been on a seizure medication called Trileptal for almost a month now {I cannot believe it has already been that long}. We wish we could get her on a medicine that would get rid of them all together. But right now it's "Trial & Error" with what medicines are going to help her. Every time Abi has a seizure, it puts her brain on hold or pause & it sets her back in her development. Although her seizures have decreased in number, they have come to be more intense & last anywhere from 10 minutes to an hour. She has different types of seizures, which have led her neurologist to believe that they might be Infantile Spasms (type of seizure that is found in Aicardi Syndrome). She is behind on a few things, but not very far behind. She does not roll from her back to her belly; she cannot sit up by herself (although, she is very close), she just started grabbing at her toys & this week, she has found her toes & has started grabbing for them. We have started evaluations with the "Up-To-3 Early Intervention Program" from Utah State University. Right now they come out and are evaluating her. The Physical Therapist came out a few weeks ago & evaluated Abi on her Motor Skills. Then this week they will be back over to evaluate her on her health, vision, & hearing, and also her general developmental skills. And then at the end of the month they will come back out & discuss her eligibility & plan goals & services for Abi. If she is eligible, then they will start working with her in the areas she needs to work on. We are so excited for this program!

We go back to Primary Children's to speak with the neurologist on Abigayle's diagnosis tomorrow. I am guessing he will tell us of things we need to know and expect about AS & also he will talk more to us about different seizure medications we can try with Abi. Also, he will most likely run another EEG on her to see if her seizures have turned into Infantile Spasms & to see if there is any other activity going on inside her brain. We are prepared for a long & informative day. We hope that we will find some things out that we don't already know, & are hoping for the best tomorrow!

Dave & I just want to thank everyone for all their love, concern, & support. We are truly blessed with such wonderful family & friends! We could not go through this without the support system that we have. Thank you all for everything! We cannot begin to even express how grateful we are for each and every one of you!
Thank you to our Dads, Jared & also, Dave, for having the faith & being so willing to give blessings to Abigayle, Dave & I. Our testimonies have grown tremendously & we are so grateful for the Gospel & for the power of prayer. We have felt the spirit on numerous occasions, & have been forever touched by the peace & comfort we have felt. Thank You! Thank YOU! THANK YOU!!!